Living with MS

Stephanie Scawen gives an insight into her life with Multiple Sclerosis and the search for a cure.

24 Oct 2013 14:14 GMT

After I had calmed down from being told that I had an incurable neurological disease that would probably one day confine me to a wheelchair, I felt strangely liberated. There was no point worrying over something that I had absolutely no control over; my fate being pre-determined by my immune system.

The only treatment for multiple sclerosis (MS) 15 years ago, shortly after I was diagnosed – and for many people today – were regular injections with unpleasant side effects and an efficacy of only about 30 percent.

And these drugs only slow down the progression of the disease. They cannot halt it. It remains incurable.

Medical science is, however, slowly catching up. But more on that later.

For those of you who know nothing about MS, it is the most common neurological disease in the world among 'young adults'. It is an auto-immune disease, which means that the body is attacking itself.

For reasons scientists still don't understand, the immune cells start destroying the protective sheath called myelin that covers all our nerves in our brain and spinal cord – a bit like the rubber coating around electrical wires. When the myelin is destroyed nerve messages can't get through to other parts of the body correctly – or sometimes at all.

At first the body can repair the damage, and the effects are temporary. But after some years the body's repairs department can't patch up the damage so well. The nerve damage after an 'MS attack' becomes more permanent – and a slow creeping paralysis sets in.

Scary huh?

Like the human body itself, MS is an immensely complicated disease. Its trajectory is different for every sufferer. And the symptoms depend on which part of the brain or spinal cord is under attack.

I've had MS for 17 years now. In that time I've suffered from double vision, numbness in my fingertips, eyebrows and left thumb. I've had half a face that itched like crazy for about ten days, even my eyelids. I was in Tonga on assignment when that happened. I knew it was an MS attack because I could have drawn a line down the centre of my face. To the left: itchy. To the right: normal.

Other people suffer from crippling headaches, weakness and fatigue so bad that they can't even get out of bed, and unspecified body aches and pains. But all of that seems rather alien to me, as I've never suffered those.

So I have to walk with a stick now, as my left leg is partially paralysed. It looks awkward. People always assume I must be in pain. But my biggest pain is people constantly asking me if I'm in pain.

I've only become disabled in the last two years. Before that I was running, diving and generally crashing around all over Asia. Me? MS? Disability? Pah, don't know what you're talking about.

And then you have 'the one': the MS attack that does change things. The one your body doesn't recover from; the one that disables you, after 15 years of being perfectly all right; the one that pulls the rug entirely from under your feet and your life.

And those feelings of being liberated by having an incurable disease that you can't control seem rather pointless, now you're faced with the cold hard fact that this is how life is from now on. And it ain't gonna get better.

So finding a cure becomes more important. And this is why I wanted to make the Al Jazeera Correspondent documentary MS & Me - The Search for a Cure.

Where are we in terms of finding better treatments than the current range of injectable medicines? Is a cure possible? How long have scientists been looking for a cure for the common cold? If they can't fix that, what chance is there for a disease like MS?

Anna Williams, a scientist at Edinburgh University’s Centre for Regenerative Medicine, does not like to use the word 'cure'. But she can see a time not too far in the future when MS can be brought under control. New drug treatments won't necessarily stop the disease happening, but they will negate any neurological damage.

Will those treatments come in time to repair the damage my body already suffers from? I can only hope, but keep a healthy dollop of cynicism at hand.

I am always reading about the latest scientific breakthroughs. And, while it's great to learn about them, many of the breakthroughs never amount to anything. There are always big steps from 'breakthrough' to effective 'treatment'.

Robin Franklin at Cambridge University found a way of repairing spinal cord damage in dogs, so that Jasper the paralysed Daschund could walk again. But that does not mean that the treatment can be translated into humans or as an effective treatment for MS.

He and his team may have also found the 'Holy Grail' for an MS cure. The magic molecule that means nerve damage caused by MS can be effectively repaired, and lost function returned. The RXR molecule is the key to making stem cells turn into oligodendrocytes – and they are the cells that make myelin.

But finding RXR and turning it into an effective treatment is still a long way off. I'd love to do without my stick. All I can do is hope that one day I can throw it away.

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